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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. enduin

    Anyone tried Xifaxan (Rifaximin) for SIBO?

    Wish you the best of luck!
  2. enduin

    Anyone tried Xifaxan (Rifaximin) for SIBO?

    I had a terrible experience with Rifaximin. I took it for suspected SIBO (couldn't get the breath test due to insurance) and after a couple of days I started having diarrhea, nausea and anxiety. This was in 2013 when I was newer to CFS and didn't know as much as I do now, so believing that my...
  3. enduin

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    This is a really long shot, but if like Prusty says, our disease provides protection from some RNA/DNA virus (at the expense of everything else) I wonder if the "something in the blood" could provide protection from covid19. Because if there was even a hint that that can be true, it would...
  4. enduin

    Low dose naltrexone vs. kratom

    I'm sorry, but saying that "kratom is just like any other opioid" is completely inaccurate. Just because YOU got addicted and experienced withdrawals, doesn't mean that it does that for everyone. In fact it's quite the opposite. There are a lot more people who used kratom to wean themselves off...
  5. enduin

    Low dose naltrexone vs. kratom

    Hard to say, but if you wanted to test that hypothesis your best bet would be "Stem and Vein" Kratom, because the opioid receptor antagonist alkaloids seem to be found mostly in the stem and vein material. I know a lot of people used stem and vein Kratom to lower their tolerance to opiates.
  6. enduin

    Howard Bloom talks about recovering from MECFS

    I think constructive criticism is always useful so I don't see anything wrong in pointing out that people should not use cyano-B12 or that magnesium oxide is at the bottom of the scale for bioavailability. If the goal is to provide useful information, then said information should be as accurate...
  7. enduin

    A Metabolic Trap for ME/CFS?

    One word of advise about Milk Thistle: I tried many Milk Thistle extracts and supplements in the past and never noticed any effect. Then I bought organic Milk Thistle seeds, ground them in a coffee grinder and started taking a spoonful a day. After a few days I noticed that I could have a beer...
  8. enduin

    Howard Bloom talks about recovering from MECFS

    There are certainly some valid, although mostly common sense, ideas in the pamphlet but for someone who claims to be really smart, there are some pretty gross mistakes too. Most people know cyanocobalamin is the absolute worst form of B12, more likely to do harm than good. And that magnesium...
  9. enduin

    Article about new potential treatment by Victoria Bohne, in Norwegian

    In light of the info from this thread, wouldn't it make sense to revisit the idea @Hip suggested in this thread: https://forums.phoenixrising.me/index.php?threads/who-would-like-to-participate-in-a-simple-study-to-measure-blood-lactate-levels.40152/ and collect some lactate data on our own? In...
  10. enduin

    Article about new potential treatment by Victoria Bohne, in Norwegian

    To be fair, unless I misunderstand the paper, the severe vision/neurological issues happened ONCE with ONE patient when they reduced the sugar content of the active drink. This is hardly proof of anything. I have no doubt that playing around with oxalates is not something to be taken lightly...
  11. enduin

    Article about new potential treatment by Victoria Bohne, in Norwegian

    One thing I forgot to mention in previous posts, my wife has tried oxaloacetate (Benagene) in the past with zero results. Obviously it's a sample of 1, but I suspect oxaloacetate is not what is important here.
  12. enduin

    Article about new potential treatment by Victoria Bohne, in Norwegian

    I'm not really sure what you are trying to say. The active recipe is called "5-active (spinach)". If they put "spinach" in the name chances are that the main ingredient is in fact spinach. And knowing that spinach is one of the food with the highest oxalate content, it makes it pretty obvious...
  13. enduin

    Article about new potential treatment by Victoria Bohne, in Norwegian

    It's pretty obvious that the main ingredient in the effective recipe is spinach, both because the recipe is called "5-spinach" and because spinach is one of the vegetables with the highest content of oxalates. And it's true that the content of soluble oxalate and ratio between soluble/insoluble...
  14. enduin

    Article about new potential treatment by Victoria Bohne, in Norwegian

    I thought about soluble vs insoluble and yet the oxalates in raw spinach are mostly soluble, with a small amount bound to calcium as insoluble calcium oxalate. So with 100g of raw spinach juice you are still getting 6-700mg of soluble oxalates, which would be 4 servings of the beverage.
  15. enduin

    Article about new potential treatment by Victoria Bohne, in Norwegian

    I'm actually a bit confused by this claim that the treatment is super dangerous and the patients cannot produce it themselves. According to this paper https://www.sciencedirect.com/science/article/pii/S0085253815469157 "The dietary oxalate intakes that we estimated for five individuals on...
  16. enduin

    Article about new potential treatment by Victoria Bohne, in Norwegian

    It wouldn't be difficult if the successful recipe were made public. I also wonder if any of the patients had any issues with kidney stones, due to the high oxalate intake...
  17. enduin

    Article about new potential treatment by Victoria Bohne, in Norwegian

    I read the whole paper and I'm gonna try to summarize what I believe to be the most important points in a CFS-friendly fashion. - The treatment tested consists of a beverage made of "fruits, greens, vegetables and nuts in proportions necessarily to achieve desirable concentration of soluble...
  18. enduin

    [Efficacy and safety of noophen in treatment of CFS in patients with cerebrovascular insufficiency]

    @debored13 I think you misunderstood me, and I think you might be a bit misinformed about some facts: - I believe that there is more than enough anecdotal evidence that kratom is perfectly safe for normal people. The article you quoted that talks about a bunch of side effects from kratom I...
  19. enduin

    [Efficacy and safety of noophen in treatment of CFS in patients with cerebrovascular insufficiency]

    I know you mean well and I'm absolutely not taking this personally, I simply disagree with your statement. And as far as having been found to have anti-androgenic properties, it was found by WHOM? If you can post a link to the study I wouldn't mind taking a look for myself to see if the test was...
  20. enduin

    [Efficacy and safety of noophen in treatment of CFS in patients with cerebrovascular insufficiency]

    I don't think that's an accurate assessment of kratom. Kratom contains a complex mix of alkaloids that include both agonists and antagonists at opioid receptors, which probably account for the fact that if used in plain leaf form and in reasonable amounts, it doesn't cause tolerance to build up...
  21. enduin

    Low Dose Dextromethorphan (cough syrup) looks promising. Has anyone tried it?

    My wife tried DXM at various dosages and unfortunately she didn't experience any improvement. I don't remember exactly now the regimen I gave her, but I think it was something like a couple of days at standard dosage, then ramped up over the following days to 4x the standard dosage (which is...
  22. enduin

    Questions Answered by Dr. Naviaux

    Thanks! Actually as far as the skin discoloration goes with BBG, that might not even be an issue: in the papers I posted they explain that BBG was preferable as a dye over Evans Blue because it didn't cause a persistent skin discoloration, but instead "a transient blueing due to its presence in...
  23. enduin

    Questions Answered by Dr. Naviaux

    @Janet Dafoe (Rose49), I’m thrilled that Ron Davis is open to considering input and possibly testing Nandixon’s idea! There is something that occurred to me after reading Nandixon’s idea to test IL-6 antagonists to narrow down Suramin’s mechanism of action: would Ron also test antipurinergic...
  24. enduin

    My Beta-Hydroxybutyrate experiment: increased activity tolerance and reduced PEM

    You are welcome. Have you ever tried to take the ketone salts on their own first thing in the morning? Btw, I would be very careful taking ketone salts with D-ribose. It's known that D-ribose should not be taken with hypoglycemia and ketone salts cause the blood glucose to drop. I remember...
  25. enduin

    My Beta-Hydroxybutyrate experiment: increased activity tolerance and reduced PEM

    What makes you think that it's the tryptophan that it's the problem and not the insulin itself? Just curious. I quickly took a look at the studies on the effect of insulin on tryptophan transportation and there doesn't seem to be a general consensus on the effect with some studies suggesting...
  26. enduin

    My Beta-Hydroxybutyrate experiment: increased activity tolerance and reduced PEM

    Yes it is safe to take and no it's not toxic, it's produced naturally by the body when carbohydrates are not available as a source of energy. There might still be mild side effects, for example I seem to get headaches with it. The main problem with just taking more to possibly have more energy...
  27. enduin

    My Beta-Hydroxybutyrate experiment: increased activity tolerance and reduced PEM

    Can you please elaborate on how you are taking it (empty stomach then wait some time before having any food like I was doing or something different) and what are the improvements you are noticing? Because of the annoying headaches I get and the issue of foods and meals restrictions, I'm only...
  28. enduin

    My Beta-Hydroxybutyrate experiment: increased activity tolerance and reduced PEM

    It certainly is small, in the grand scheme of things. It's obvious that we can't rely on ketone salts for the entirety of our body's energy demand. However, the ketone salts might be able to temporarily relieve some of the energy starvation from crucial areas, such as the brain, since ketones...
  29. enduin

    My Beta-Hydroxybutyrate experiment: increased activity tolerance and reduced PEM

    Ok so this is a little addendum to the initial post: - it seems like taking ketone salts does something to my glucose sensitivity. I'm pre-diabetic, although after 4 years of careful monitoring my carb intake, I'm not sure I would still qualify as my glucose tolerance has improved. Unless I...
  30. enduin

    My Beta-Hydroxybutyrate experiment: increased activity tolerance and reduced PEM

    I have recently been experimenting with beta-hydroxybutyric acid supplements (commonly known as ketone salts) and I wanted to share the results. I know that a lot of people have experimented with low-carb diets (although I’m not sure how many experimented with a proper ketogenic diet which is...